Tuesday, 29 April 2014

Is representation the best way?

Patient involvement in research has, in many respects, become defined in recent years by the practice of placing two people on a committee. The idea that this is the recommended model of practice is, however, a myth. There is no rule or advice that this should be the standard means of active involvement in research. 

The guidance is simple: should you choose to have patient or lay representatives on a group, it is better to have two people rather than one. And yet, we continue on with the practice of seeking to appoint two representatives often without any clear guidance about the role and the intent.

It is also worth noting that ‘representation' does not necessarily require the physical presence of membership of a committee or board. Representation can be an account, a description, an image or a portrayal of the circumstances and events surrounding personal experiences.

The purpose of ‘active involvement’ should be that our needs, as those who use services, are taken into account, our voices are heard, genuinely listen to and are used to inform, shape and influence the making of decisions that directly or indirectly affect us. It is about playing an equal part in the process of decision-making. Involvement is about having a say and influence. It does not mean that there has to be a member of a committee.

There may be times when we can have greater say by remaining at a distance, separated on the outside. There will be other times when we need, not only to be at the table but chairing the direction, discussion and decisions.

The approach of having a lay, patient, or public presence has, I believe, undeniably helped change the culture and helped embed the whole concept of active involvement in research practice, processes and policy. It has certainly helped ensure greater openness, transparency and accountability but so have independent advocacy groups and individuals. 

Representative membership can have its limitations. The domain of decision-making in NHS Research is often done through meetings, boards and committees. Involvement is often set in the context of such meetings requiring attendance and membership.
The terms of reference for these roles are often about bringing the patient/lay voice to the table where the complexity of language, especially in research meetings, almost demands a level of competence and learning.
These factors, therefore, attract a certain type of person - mainly older, professional, with time on their hands, often male and white along with a familiarity and ease with committee processes helps sustain that status quo. 

I am bound to say, as I recognise myself in that description, that there is certain value in having such individuals. We do bring a wealth of knowledge and skills often from other fields of life as well as our more direct patient experience. Our views can be helpful but can never properly reflect the diversity of culture and background of the public in general.

This approach restricts achievement and aspiration...

·       There is no recognised constituency to give authority 
·       Acclimitisation tends to take hold after a few meetings
·       The box of ‘involving the public’ is too easily ticked
·       Little is ever recorded of any impact or benefit

What is required is a more diverse and varied approach, which enables and empowers individuals to inform, shape and influence research not just to rely on a model of committee representation.

A more robust, diverse and meaningful plan of involving people is required.

Log in again next week for more on this issue.